Adele's story

Breast cancer followed by ovarian cancer was more than just bad luck

When Adele was diagnosed with breast cancer in 1999, her doctor put it down to bad luck. She had no idea that a little over 8 years later she’d be dealing with an ovarian cancer diagnosis and the knowledge that she had a BRCA 2 gene mutation. Here Adele talks about Angelina Jolie, genetic testing and why when it comes to her daughter’s future, all she can do is hope…

I was a fit and healthy 35 year-old when I found myself diagnosed with breast cancer. After a lumpectomy and radiotherapy, life went on, but when I questioned my GP about why someone in my position would get breast cancer, I was told it was probably just bad luck. I was put on a five-year prescription of tamoxifen and told not to get pregnant while taking it.

More than just bad luck

Eight and a half years later, aged 44, I was diagnosed with ovarian cancer. The consultants said that it was unusual for a person to be diagnosed with two separate cancers without there being genetic involvement. I was counselled about the BRCA gene and given a family history form to fill in. What came out was that at least four members of my father’s family had died of cancer - my aunt and uncle and two great aunts.

At the time, no one on my mother’s side had been given a cancer diagnosis, though that has since changed. It was most likely that if there was genetic involvement it was coming from my dad’s side. My blood was tested and found to have the BRCA 2 gene mutation.

My dad died of prostate cancer, which is also connected to the BRCA 2 gene, in 2011. Interestingly, my grandmother, who we think we inherited the BRCA gene from, died in her 70s, having never had a cancer diagnosis. However, at least three of her brother’s daughters have, two with breast cancer and one, like me, with both breast and ovarian cancer.

Angelina Jolie

As someone with a BRCA gene mutation, I was very interested in the publicity around Angelina Jolie’s decision to have a double mastectomy after discovering that she had the BRCA 1 gene mutation.

Obviously I was sad for Angelina that she needed such drastic surgery, but I was pleased that she was bringing awareness to these gene mutations that can cause cancer. When she later had an oophorectomy to reduce her risk of getting ovarian cancer it gave much needed publicity to ovarian cancer which many women are unaware of.

I also know she must be looking at her biological children - Shiloh, eight, and six-year-old twins Knox and Vivienne - and thinking, ‘when do I have The Conversation with you?’ The conversation in which she must persuade them to be tested when they are old enough to understand.

Implications

If I am honest, knowing I had the faulty gene gave me a sense of relief because it helped to explain why I had been so unlucky to get cancer twice. However, I was immediately aware of the implications for the rest of my family.

I have two sisters, two brothers, and a daughter. When a parent carries the gene, each child has a 50% chance of inheriting it. There is nothing you can do but hope.

When I was first diagnosed, I wanted my daughter tested straight away, but the healthcare professionals counselled against this as she was only 13. They said that she should ideally be at least 18 and should be fully aware of the implications of the possible results.

My four siblings, have all been tested and three of them carry the gene mutation. My sister, Dr. Yvette Harris, was diagnosed with breast cancer, aged 48, about a month before getting her positive BRCA result. Yvette took immediate action with a double mastectomy. A few months after completing her radiation, she also had her ovaries removed. Eight years later, she remains cancer free.

Her two daughters were both tested for BRCA 2 and one daughter has the mutation. She has completed her family and has had risk-reducing mastectomies.

Important decisions to make

So closer to home, there are the cases of me and my daughter. In theory, I am still at risk of further breast cancers, so the smart thing to do would be to have my breasts removed and reconstructed immediately. On the other hand, I have had radiotherapy to one breast and I have had two courses of chemo for ovarian cancer in 2007/2008 and then again in 2010. I am hoping that all that chemo has also killed off any breast cancer cells that were still lurking. However, if any new lumps of any kind came up in either breast, I would have them both removed and reconstructed straightaway.

And my beautiful daughter, will she have a test to see if she carries the BRCA gene? Well that is totally her choice - no pressure from mum! If she did have it they take into account the age I developed cancer, and would suggest she have her ovaries removed at least 10 years before that - so in her case that would be age 34. I would hope she would have had children by then. Actually, I hope she does not have this BRCA 2 gene mutation at all. Fingers crossed!